Mary White (Fianna Fail) | Oireachtas source

The Minister of State is very welcome. Last week, on the Order of Business, I raised the case of Carol Brill who has Usher syndrome. She has a devastating rare genetic disease that causes the gradual deterioration of hearing and sight for which there is no cure or treatment at present. The Leader proposed and suggested that it would be more appropriate for me to raise the matter as a Commencement matter this week.

Last year, at a meeting of the Oireachtas Joint Committee on Health and Children, Carol spoke and pleaded passionately for help for people who have the dual-sensory loss of sight and hearing. She spoke about the urgency of recognising deaf-blindness as a unique disability. In 2015, Carol was formally diagnosed with Usher syndrome type 2a. The diagnosis was only possible through the relationships that Carol had forged with many of the international researchers working in the field. She did all of this with drive and energy, despite being handicapped with deteriorating sight and hearing. She has to wear very high powered hearing aids but she is not entitled to get them on a medical card. She is 45 years of age and it is very difficult for her to get a job with her unique problem.

I wish to point out that there is no dedicated entry on the national physical and sensory disability database to record her needs and that of people like her. Such people should have their needs recorded on the database.There is not a single case worker to look after her needs and the needs of other people with her unique disability. I am pleading with the Minister of State in the dying days of this Government and, please God, when she goes forward again herself in the next Government, that this issue be dealt with and that there be compassion for the people who have this rare syndrome. The horror of going deaf and blind simultaneously just does not bear thinking about - everything going dark. Deafness and blindness, generally speaking, are unique to people as they get older but this affects young people. Carol herself is 45 years of age. What is keeping her spirits going is her daughter of eight, Sarah. She conquered depression when her marriage broke up and her baby son died. She has come through so much and is an inspiring person. I am here today pleading her case.